HAE Speaks

Kayla, an individual with HAE, shares her perspective on being recently diagnosed with HAE, advocating for herself, and her journey to a diagnosis.

For more information about Hereditary Angioedema please visit HAEA.org

In this episode of the HAE Speaks podcast, the HAEA staff talks about their accomplishments in 2022. Listen now to hear what resources are available!

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In this episode of the HAE Speaks podcast, Jess talks about the importance of advocacy and how you can get involved.

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In this episode of the HAE Speaks podcast we hear from HAEA staff member Adina.  Adina shares her HAE journey from diagnosis to today.

For more information about Hereditary Angioedema please visit HAEA.org

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In this episode Bobbi shares her journey with HAE as a person diagnosed with HAE, turning into also a caregiver, and how her and her girls are living a great life with HAE.

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A message from our Sponsor: BioCryst Pharmaceuticals:

In this episode of the HAE Speaks podcast, we listen to Red share his experience with HAE and preventing attacks with ORLADEYO® (berotralstat), the once daily oral …

In this episode of the HAE Speaks podcast, Troyce provides tips about going back to school while having HAE. Troyce provides insight at each level of …

In this episode of the HAE Speaks podcast, we listen to Abby share her experience and excitement about being a part of the HAEA Brady club.

For more information about Hereditary Angioedema please visit HAEA.org

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The 2022 HAE IN-MOTION® - Step it up for HAE virtual challenge registration is open.  In this episode, hear tips, tricks, and advice from a past participant. Register now at HAEA.org.  For more information about …

Lisa and Mike tell us about the 2022 HAE day :-) campaign. Register now at HAEA.org.  For more information about Hereditary Angioedema please visit HAEA.org

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BioCryst Pharmaceuticals

BioMarin

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Aysha shares her story of living with HAE and describes her journey of finding a diagnosis.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

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Troyce, an HAEA Health team member, provides information and tips about insurance in 2022.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

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The Hereditary Angioedema Association continues to be the galvanizing force advocating and supporting the HAE community.  In this episode, the HAEA staff provides a review of 2021 programs and accomplishments.

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Bobbi shares her story of living with HAE and describes how the  evolution of treatments has vastly improved over the years.

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In this episode, Mike and Missy discuss HAEA Meet and Greet events, and answer some important questions.  What is an HAEA Meet and Greet?  Who should …

Jenny talks about how she handles having HAE and putting herself first when she is not having the best of days. Jenny is a huge advocate of self care, especially as a person living with a rare disease.

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In this episode Christine and Mike discuss the US HAEA Virtual Capitol Hill Campaign and the importance of advocating for the HAE.

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In this episode of the HAE speaks podcast Antonio and Jack talk about their DIY event. They discuss how the idea started and their game plan to make the event a success.

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In this episode of HAE Speaks podcast Sonia discusses her journey with HAE and how much life has changed since diagnosis.

For more information about Hereditary Angioedema please visit HAEA.org

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Lisa talks about the HAE IN-MOTION® Event that she and her family participate in.  Enjoying walks together as a family, and entering in the weekly photo contest.  Also, Lisa talks about promoting the event on Facebook.

Chaeli discusses traveling with HAE. She talks about how she prepares to travel by car and plane.

For more information about Hereditary Angioedema please visit HAEA.org

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BioCryst …

In this episode of HAE Speaks, Lisa talks about how Team Jack started. Lisa also discusses all of the DIY HAE events Team Jack hosts and attends each year.

For more information about Hereditary Angioedema please visit …

Episode 12 is hosted by Jess, an HAE patient and HAEA team member. She talks about her journey through diagnosis, her experience traveling abroad, …

In this episode, Missy, Marti and Marna talk about speaking with your children’s school and teachers of their HAE diagnosis. As mothers of children …

Hannah C., an HAE patient, and HAEA team member, talks about her HAE journey, including growing up with an HAE diagnosis, attending school, and …

Stephanie speaks with Missy about her HAE journey during her pregnancies.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsor

Ionis Pharmaceuticals

As you may already know, the HAEA has adapted to the uncertainty provoked by the COVID-19 pandemic by swiftly transitioning our 2020 scheduled …

In this episode of HAE Speaks we connect with Marna and Adina to learn more about the HAEA Support Groups.

Linda P. provides insight to her HAE journey and tips about creating HAE awareness.

Michael G. shares his road to treatment and overcoming his fear of needles.

Episode 4 - Mandy is a mother and caregiver to her son, Luke.   Listen as Mandy shares a part of their journey,  life before and after an HAE diagnosis of a child.

Tony Castaldo, CEO of the HAE Association provides an information packed update on the new HAE treatments that are being developed by 9 companies. Tune in to this  podcast for the latest exciting details about this …

Missy interviews an HAE patient, caregiver and two Brady Club youngsters about COVID. Each of them with great ideas and tips during this time.

Episode 1

HAE Speaks Podcast: 

Missy M. shares a glimpse into her life as an HAE caregiver for her husband Mike.  

For more information about HAE and the US Hereditary Angioedema Association please visit HAEA.org

A brief overview of HAE and the Hereditary Angioedema Association.